Tuesday, December 22, 2009

Time out- Potty Break!!

13 days and counting until Lily's cardio consult. Try as I may to bump the date closer, that was a no go. Dr.C is out on vacation until the 4th, and we can not forgo the consult, which to me is beyond frustrating. Especially when we already discussed what was going to be happening last year, right after Lily's 3rd OHS. When we talked we all knew what this 4th surgery would bring, and what would be happening. Even Dr.Rhee said, we know what needs to be done, we just need a date now. Try as I may, I could not get out of the consult, ugh. So like I said, 13 days, 13 days until we sit and discuss the fine details of the surgery, the survival odds, the recovery, what our future will look like afterward. Nothing I haven't already heard, but must hear again in order to get a date. I will be pushing for surgery by the end of that week. I know some may think we are crazy for pushing, but I am a little unsettled up here in Anthem, 30-45 mins away from St.Joes, and if he valve was to blow from the pressure, well, we would have no chance of her making it. So I am not at ease up here. From everything I have read and cross referenced, any gradient over 100 is sever and needs surgery as soon as possible. Her heart is full functioning right now, minus the valve, and I would like to keep it that way. I don't want it working any harder then it needs to.
I am Lily's best advocate, I can start seeing little signs of exhaustion. Where her eyes don't have the twinkle and brilliant sparkle to them. They seem dull, along with her personality when she gets like that. But they are so little, unless you know her, you won't catch it. If I were to take her in for it, they would look at me like I was crazy. But like Chris said, you can tell something is wrong, this isn't how our daughter acts. So I may have to become one of those parents the doctors all hate, the ones where they go, "It's her again." I have been real good about it, up until now. Now mama bear has come out to play and will do anything and everything needed to get this show on the road.

on the upside of all of this chaos....Lily went pee pee in the potty. My 21 month old little girl, came up to me, pointed at her diaper and then pointed to the bathroom. I asked her if she wanted a new diaper and she said no, but she grabbed my hand and took me to the bathroom. Once there I asked her if she needed to go pee pee and she said, "yeah." She lifted her dress so I could take her diaper off. I put her up on the potty and told her this is where big girls go pee pee. She kept pointing towards her's and I told her yes, that was her pee pee. I didn't actually expect anything of it, but just let her sit there. Well, low and behold, i hear, tinkle tinkle tinkle. She looked at me and smiled, but all the while she held onto the potty for dear life. I clapped for her and gave her a hug when I got her down. It is unfortunate she shows interest now, because we will regress because of this surgery. After her second birthday here in Feb, I do plan on getting her, her own little potty. I am determined to have her potty trained by 2 1/2 like I did with the boys....... on can hope!!

Love Hugs and Blessings

Friday, December 18, 2009

Surgery Consult scheduled

The H&L Institute called today and Dr.C is clear booked until January 4th. Which make me stressed but understanding. I know Lily's heart is stable enough to handle waiting, but the gearing up and house preparation's, kids, and husband situation, very stressful. Chris usually stays home with the boys if we are in the hospital longer then a week, but trying to figure out what to do with them during the first week is the stressful part. We have never had Lucas in school before and had to try to work around it. I will not be leaving the hospital at all for the first week. We are prepared for 2 weeks because we are told it usually is a 2 week recovery time for valve replacements. I just need to make sure, there is enough things for Chris to make the boys, because lets face it, unless it has directions on the box, there is no cooking it for my husband. (Sorry honey, I love you, but you are not Mr. Betty Crocker in the kitchen) As many heart parents are aware, the weeks following up to a surgery are nearly as stressful as the surgery it's self....nearly.

Anywho, off track here, consult will take place at 3:45, we will just review what we already know, but it is procedure that has to be followed. Doubt anything has changed in the game plan, but just a refresher for all of us. After the appointment, we will meet over with Juanita and schedule the surgery, which usually takes place within a week after consult. So, I will keep everyone updated. Sorry about the long post previously, I just wanted to get all the medical info into it.

As of right now, Lily is sick, I do believe she has Hand Foot and Mouth, which if any of your children have had it, blah, not lovely at all. Her tongue is covered in white, looks like yeast but there are now little red spots on her tongue. She is running a fever and is VERY cranky, not our normal perky princess at all. I am just hoping she will be ship shape for Christmas. I got her a bunch of princess jewelry, my mom spilled the beans and told me she got her a tutu and a crown, my mom and I can't help but get excited over girly Christmas presents. I am trying to rack my brain for stuff I can get her to bring to the hospital but will still be fun to play with when she is at home. I am thinking about some doll clothes because she loves her baby and loves its' clothes to be changed often. I will wrap up shopping this weekend, ugh, right now we have 6 days until Christmas, I never leave my shopping undo this late, but fiances have been horrid this year, but as we all know, presents don't make Christmas, family does, that is all that truly matters.

If anything changes before the 4th I will of course let everyone know, but I am hoping for a quiet, yet eventful Christmas and New Year. How the heck are we about to ring in 2010? ummm I feel like we were just ringing in the millennium with people going crazy buying all the toilet paper and water from the stores. Who remembers that? Still makes me laugh. Wonder if 2012 will be the same way...better start stocking up now!...just as a precaution.

Love Hugs and Blessings

Wednesday, December 16, 2009

December of Truth

I love the opening lyrics of Imogen Heaps song Hide and Seek. "Where are we? What the hell is going on?" I use to listen to the song during my pregnancy with Lily, I understood it, it understood me, matched my moods, and the unspoken words I could never get out. The song is supposed to be about lovers, but to me, any song can be interrupted to each their own. In this case, I relate it under the terms of Lily; funny how I do that. Where am I going with this? Why am I avoiding talking about what needs to be blogged, well because at the moment I want to play some Marco-polo with this tender and sensitive subject. Like hide and seek, you know you can't stay hidden forever, you can't run forever, but it is sure fun trying.

Today while I was on my way to the clinic with Lily, I of course had the knots in my stomach like I always do. The dreading, sinking feeling that my life, her life, our lives could turn upside down at a moments notice. I try not to focus on this during the drive, but it is always tucked into the back of my mind. I guess I keep it as my caution reminder, the Expect the worse but hope for the best scenario I guess you can say. So when you get bad news, it doesn't feel like you just either ran headlong into a brick wall, or had the rug pulled out from under you and instead of falling backwards, falling forwards and hitting the coffee table on the way down.

Well, I am not sure how I feel at the moment, I think during the hit, or the fall, I became numb. In a way, I didn't expect for her to go from being decent during her last appointment, to being so down hill this go around. For 6 months we have sat at a 70-75 gradient (this will explain more what a gradient is. Lily is Aortic-valve stenosis) on her sub-aortic valve. 70-75 is high, a moderate problem, anything above 80 they are uncomfortable with and consider sever. Well if 80 wasn't good enough to send the flags up, Lily decided she wanted a higher number, something such as, 104.....yeah, that's right, not 84, no no, we couldn't have 90 something, she decided she wanted a good solid even number, and seeing she knows 4 is mommies favorite number and 100 is a good solid even number, why not add them together? Sorry, I promised myself that I would not add any of my sarcastivness to this blog.

104....wow...104, now here is the mind boggler, 104 probably is on the lower side of what it actually is because when she went in last year for her surgery they thought she was at 80ish when we went in, but once in she was in the 90's. So yeah..Dr.Rhee's words to me was, "Merry Christmas Lily! She knew what she wanted for Christmas." He told me that we can allow her, her Christmas at home, but after that she has to go in. No heart cath this time around, "Not needed" was the answer I got when asked. We know what needs to be done, there is no reason for another one.

I knew it was bad during her echo when Dr.A and Dr.D walked in. Seeing the two of them, together, looking at the echo, never good. Dr.D was the one who red flagged Lily's heart after her first surgery. I got the pat on the shoulder as they were both walking out of the room. It is their form of comfort, support, and sympathy. But shockingly, I didn't even winch, I just shook my head in understanding and smiled. We knew it was coming, we all were dragging our feet, but it seems we walked into a pit of quicksand and spiraled down quickly. Lily shows no sign of being bothered by it, she isn't in heart failure, so she doesn't have to be admitted for an emergency surgery like her second one.

Home for the holidays! I did get my Christmas Wish. All I wanted was to be able to spend it at home with my family. I have been praying that we could at least make it through the holidays, so everyone can see Lily, spend time with her before she had to go back in. The Lord answered, he listened, like he always does, now it is my turn to be excepting.

We know the time has come yet again, Dr.C said that he only expected a year off the last surgery, well we got it. It has been a year, just a few days past actually. Now it is time for the original operation to be done which is called the Ross-Kono procedure. For the crash course refresher it goes something like this.

1: They will take her aortic valve and get rid of it all together. It is completely defected. The aortic valve is supposed to have 3 leaf like flaps to it, Lily's only has 2.

2: Once they get rid of that valve, they will remove her pulmonary valve and attach it to her aortic valve side. (As long as her heart doesn't reject the pulmonary valve on that side, the valve will grow with her and never have to be replaced)

3: They will be adding a synthetic valve to the pulmonary side. From everything I have been told and all i have read, it is easier to live with leaky pressures on the pulmonary side rather then the aortic side. This valve will need to be replaced every 3-5 years depending on growth. It can be sooner at some points, and later at others.

These valve replacement surgeries will take place up until she is 21 years of age, at that time, they will add an actual artificial valve, that will only need to be replaced every 20 years from what Dr.C told me.

Now what are the survival odds to this very delicate surgery, because as simple as I might have made that sound above, it is a very tedious and long surgery. We are looking at about a 8hour surgery. The odds are not as high as her other surgeries which have always been in the 80-90%. This time we are looking at a 70-80%(from the latest odds I just checked into it says a 90-98% rate. I will double check with Dr.C and see what he says) survival, unless the odds have gone up since then. Now, I will tell you, like it is always told to me, these are just numbers. Every patient is different; Lily is different. Lily seems to bounce back good, just depending on the wear of her heart. After her first surgery it took them twice to get her off of the Heart and Lung machine (Bypass), after the second, it took six tries, they weren't sure if they could get her off of it before they came upstairs, but they tried again and her heart finally started on its' own. After her third surgery, one try was all it took and her heart took off on its' own. But her heart wasn't as bad during the first or the third as it was with the second. She was in bad shape during that time, heart failure, it kicked her butt. But I have been told, it won't be like that again, we won't let her heart get that bad. It isn't as bad, but not as good as it was 2 months ago. So once again...it just depends on the strength of the heart, the determination of the person. Lily is strong, and she is strong willed. Will it be enough for a 4th open heart surgery in 2 years? We hope, we pray, and we look no further then tomorrow. I may not be ready today, but her surgery isn't today, so I don't have to be. Some of you might remember her last surgery, i felt the same way, but yet I was ready when I had to be (read here).

So what is there left to say? Well, first and foremost. Happy Holidays to everyone. I hope everyone has a very Merry Christmas with their families. May we all enjoy the time with family, being surrounded by love. I know I will post again before the new year, so I will wait on saying anything on that. I am going to go wallow in sweet misery. I am looking now at, after this surgery, I get her to myself for 3-5 years. 3-5 years of home, sub-normal life, and no hospital (for the heart at least). There is a light at the end of this tunnel, just trying to focus on it right now, trying to focus for the sake of my sanity. What will be will be. I think I am going to go sneak in and watch Lily sleep now. Nothing like watching my babies sleep.

Love Hugs and Blessings
Merry Christmas from the McLaughlins

Monday, December 7, 2009

Prideful-Back talk-Artistic-Black eye?

Oh goodness me, where does one begin when there is so much to tell? I know I know, the beginning is usually the best place, but that is a lot to start with. So lets start with the good, then work to the bad and the ugly, shall we?

First and foremost, I am a very proud mother right now. I had a sit down with Lucas's school psychologist, Occupational therapist, Speech therapist, special ed teach, and his general education teacher. The meeting was to determine if Lucas was still in need of services he once qualified for. *The quick of the long here, Lucas was once in early intervention preschool. He was delayed in many areas, speech being his main problem. He didn't utter his first word until he was 3, and didn't start sentences until closer to 4. We worked mainly through sign language and picture books and such. We logged many hours of therapy time, never able to get a therapist in the home because one never became available to us in our area.* Since then he has done so much better. We still have textile problems with him and sensory issues, but for the most part he has evened out. Meaning, he isn't having as many problems and doesn't qualify for any special services anymore. (That makes me happy, but not what I am overly proud about...that is coming) Well, during this sit down that we had, everyone went around and gave their thoughts, evaluations, and opinions, about Lucas. OT, and Speech, along with the Special Ed teacher all agreed Lucas was no longer in need of services, OT did recommend that Lucas needed to work on his fine motor functions a little bit, but for the most part, he wasn't delayed, just has his own special way of getting things done; and correctly at that. Then it came time to ask him teacher her evaluation, opinions, and thoughts on how Lucas has developed since school started. (Here comes the chest puffing part) She said, that Lucas has come the furthest out of every student, in his attitude, maturity, and learning levels. That he is one of her top 10 students of the class and is the top 3 of her readers. That during centers (free time) he chooses to participate 9-10 in the academic, rather then playing with toys and such! Everyone of us just were awed by that factor. She also went on to say that Lucas does not have just one set friend in the classroom, that he is liked by all. That he is always seen with different kids all through out the day, and he can be considered a, Mr. Congeniality.....sigh.... My baby boy has grown up so much, I can not believe how far he has come. His temper and tantrums may still rage out of control from time to time, but not to the point he was at while I was pregnant with Austin. It was so bad I had to learn a special hold for him, just so he couldn't kick or hit my stomach and throw me into labor again...yes it was that bad...Anywho, that is the past, this is the present. He makes me one heck of a proud mommy! Someone might need to that a needle to my head and pop it, bring me back down to earth!

Now lets talk about Austin....truly not much to talk about, Austin is Austin. Plain and simple actually. Ok, maybe not so plain, and not very simple, but nothing is new with him. He still has a smart mouth to him, is going through his temperamental three's, which i hope he will kick when he turns 4 here in January. His back talk is getting old quickly. He actually told me about a week ago, when we were over at my sister and brother in laws house, that I can not tell him what to do, and to not talk to him that way (All beacause I told him not to drive a car on the wall and that he needed to drive it where it belonged, or mommywould take it away. I had asked him twice before to stop). In turn his back talk was answered swiftly with a firm swat on his butt and a time out. Afterwards we had the discussion of who I am, and why I do the things I do, and who he is, and what is acceptable and not acceptable. He was mad at me, and he told me so. Which I lovingly reminded him, that as much fun as mommy can be sometimes, I am not here to be his friend all the time either. Since then I have not heard those comments from his little mouth, but others that are not so pretty. Chris and are at wits ends, trying to figure out where this is coming from, the only thing we could come up with is, it is just his personality, and we need to help him manage it and teach him what he can and cannot say. The way he is going right now, he will be my worst nightmare in school and end up getting beat up because of his mouth. He knows not how to censor himself, you could say he comes by that naturally. I use to be that way as a child, but not as blunt as he is. Oh well, right now we take it day by day and will continue to work with him. No use worrying over what is to come....I keep telling myself this, but it has yet to sink in..lol!

Now onto Lily we go. Hummm where do I start? Should we talk about her artist abilities with my walls? Or should we skip that and start with the mild concussion she ended up in the ER with?

Concussion it is. Well Lily is officially a tomboy. She loves to be like her brothers and climb. Monkey see monkey do right? Well, Lily decided that her new thing would be to get the little chairs out of our entry closet where they are kept. She has a fascination with our DVD player, she learned how to work the volume nob, to our unfortunate surprise. Well, I have caught her a few times standing on her chair, which I will swat her on the back of the diaper and tell her "No No". I tell her she can get owwies and that is why we don't stand on them. Well on the unfortunate night of the 4th, Lily decided to pull one of those blasted chairs out. I didn't know until it was to late. I turned around in the kitchen to wash my hands in the sink, and I look to the living room, and there she was, trying to reach something on top of the t.v, which was still way out of her reach I might add. I could not get my hands washed and around the corner quick enough to catch her. I saw it all in slow motion is seems. She went head first (which of course she has a big one I might add) right into our sub woofer for our surround sound. The way she went down and hit, caused her to hit that, the rebound into the t.v stand, and she snapped her neck back while she was at it, which in the end come to find out she got a case of whiplash from. She cried of course, she was swelling around her eye and forehead. I took her to the kitchen and got an ice pack and laid her down on the couch. I watched her, no throwing up, no lethargy, nada. I gave her some Tylenol, she ate dinner, and went to bed and slept soundly. Well, the next day was not so lovely. She woke up screaming, I gave her more Tylenol, her face was swollen and puffy, and after breakfast, she started holding her head telling me, "Oww", she held her head and cried "Oww". She took her nap, slept a good 3 hours, when she woke up she was the same way. By that time, the peds office was closed so I called the on call. I explained what happened and they said better to be safe then sorry, and take her into the ER. So packed her up and took her into Mindy's Place (for those of you who are not in AZ, that is a local Peds ER that we have) I would have preferred St.Joe's, but I was not driving that far for something that was not heart related.

We got there and Lily was a trooper. She held her finger out when she saw the pulse ox, and then when she saw the blood pressure cuff she held her arm up. She leaned forward then they went to listen to her and was very quiet. They were amazed by how good she was, then I told them about her medical condition and they were no longer surprised but in awe of how big she is. Which is 31lbs 4 oz now. The nurse that was checking us in through triage, told me her 5 year old daughter had a heart defect that was surgically repaired at 8 months old, by Lily's second surgeon, Dr.N. We sat and talked heart mom shop talk while she finished up what she needed to in the computer. Her daughter is healthy and thriving. She is glad to hear of such a support group with the St.Joe's parents, and said the new unit must be nice when I told her about the 7th floor, which has become home to many of us from time to time.

Lily was taken back, not sure if it was due to her heart condition that got us straight back, or it was because of her major black eye, either or, it was nice to not have to wait in the waiting room with the many other sick children that were there. I set up my laptop as soon as we were in the room so Lily would have something to keep her entertained, and she was way to cute for her own good. Take a look at the video, it is all the proof needed to testify for the cuteness!

Hurt or not she knows how to put her cuteness on. We were taken back to CT shortly after, which believe it or not, she screamed through the whole process. Which to me makes no sense. She holds still for blood pressure, pulse ox, stereoscope, and even IVs. She whimpers with them, but holds still for them, but not with the CT. Ohh she was mad, fuming ticked off at me. She held her breath, I had to blow on her face, she yelled at me through her baby gibberish, and I am pretty sure if I could have translated it, I would have been hearing a strand of curses from her. When we were done, she didn't want me to snuggle with her, didn't really even want me to hold her. We got back to her room and I put her down, she huffed, shot me a dirty look, and then pointed to her movie. I felt like her servant and I was being reprimanded for my incompetency of looking out for her while we were there. Granted you and I know I was looking out for her by getting her check out, but to her, I was a big bad mean mommy, for holding her down and singing to her instead of picking her up when she screamed. She is a firecracker, she has a very strong willed and determined personality, where on earth she got that from I will never know...sigh...guilty again!

The results came back within 15 mins and sure as heck, she had a mild concussion. Nothing I didn't know. Nothing more I could do that I wasn't already doing, but I took her in just to confirm my suspicions, and just encase things got worse I wouldn't have CPS called on me for child neglect because goodness knows these days, it seems many parents can't be trusted.

So nothing more then Tylenol and Motrin could help out, got the, if she gots any worse such as, weakened muscles on one side, throwing up, lethargy, black outs, etc, bring her back immediately. Which to me is common sense seeing that would not be the norm for Lily. But like i also said, they didn't tell me anything I didn't already know with two boys on hand. All in all, Lily gave us one heck of a scare, not something I want to repeat, but she did learn her lesson, and hasn't climbed on chairs since then. Well at least one of my children learn from their mistakes!

Now on to my little baby Van Gogh over here; I will be needing to go up to the office and find out what paint they use on these walls, so I can paint over the areas she has colored on. Now many of you will be saying, why don't you just get one of those magic erase scrub pads, well my friends, tis such an easy answer; flat wall paint! UGH, lets talk real quick on the stupidity of this in an apartment. Do they seriously think that areas such as the dinning area will not get scuffed when chairs are in proximity to the walls? Then besides chairs and walls, excuse me while we talk about children and apartments, and crayons and little budding artist. A parent can restrain children and take away crayons, but when an older child must do their homework and these coloring objects become available yet again, the walls are at the mercy of the child's artistic abilities, when they run away with a crayon before mommy is any wiser to it. Let's just say this, when Chris left his permanent marker on our bathroom counter, and little miss grubby fingers got a hold of it, mommy about had a coronary when she walked into the hallway and saw the wall. I want to give a big thank you to the creator of acetone nail polish remover. I didn't get it all off, but at least it is hardly noticeable now. If it wasn't for Lucas and his school work, and Austin's amazing drawing abilities, I would remove all crayons, markers, and pencils from my household until her age of proper coloring maturity.

All in all the household is chaotic and full of craziness with 3 children. 6, almost 4, and almost 2, truly do give you a run for your money!!

Love hugs and blessings

~PS: I will post a slew of pictures here a bit later, my internet connection is being a bit slow right now and I am having trouble uploading them, so be on the look out!